I am mum to Dinky who is awesome- she also has been diagnosed with Autistic Spectrum Disorder-PDA, ADHD and Sensory integration difficulties

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Am I doing the right thing? Yes. No. Maybe.

I have had a few people question my choice for Dinky of taking her out of school. Some have agreed once I have explained, some just do not have the capacity to understand, and then there are those that think she ‘can’t be that bad’ and should be in school, and there is one (there is always one) who thinks that the school should be using inclusion because it should work for all kids with additional needs. (Rolls eyes!)
Why does it bug me? For the same reason that the school bugged me when they would say that there was nothing other than behavioural problems, it made me question myself.
No one ever knows if they are doing right or wrong thing by their kids (unless they are doing something illegal, then they do know they are wrong).

Having a child who, most professionals describe as, complex, means no one really knows what on earth they are doing. Which is why it is so important to get the PDA diagnosis as then at least we have a signpost that everyone can follow. I already do, some didn’t, which left me with the uncomfortable question- do I stop as the different rules and boundaries confuse her or carry on knowing PDA strategies work? As with anything I compromised, I did as much as I could to alleviate her anxiety, while maintaining a certain level of expectation with minimal amount of demands. Was I doing the right thing? I hoped so, it was certainly better than what the school were doing.

What about taking her out of school?
The law says she should be in school, however she was struggling and so were the school and it was stressful for everyone involved, the adults have to suck it up, but it is my job as a parent to protect her, the only way I could do that would be to remove her. So I did. But that doesn’t mean it is definitely the right choice. The professionals I have spoken to all advised against it, but none have been overly bothered, and that includes the SEN department and the education welfare officer.

I feel I’m doing the right thing, but I cant help questioning myself when others are questioning me.

I have had certain things said…

dinky is missing education

My response was: if she was being educated, one of her targets to work towards wouldn’t be ‘to participate in 75% of learning activities’. They had to drop one of the three letters from her October IEP as she hasn’t mastered any of them. So why put her through the stress of school when she wasn’t learning?

you can’t take her out for your own benefit

Once I stopped laughing! I replied: my benefit? I could use the school for 3.5 hours a day, 5 days a week free childcare, she would get lunch and be entertained (sort of, when she isn’t she tends to be hanging off the gate!). Instead, my food bill has doubled, I have to find ways to keep her entertained which isn’t always cheap and I’m blooming exhausted! My benefit! The only thing I benefit from is not having to deal with the muppets at the school!

you can’t take her to Legoland! She is supposed to be home educated

My response: first of all, I NEVER said I was home educating! I said I was taking her out of school until a suitable placement is found. If a team of qualified teachers can’t teach Dinky to learn to write 3 letters of the alphabet in a whole term, what chance have I got? (That’s not to say we haven’t done some bits, because we have, just not a lot!)
Secondly, who is to say that I’m not teaching her on a Saturday and taking her out in the quieter period during the week? Surely if I was home educating I could set my own times and days, I wouldn’t be bound by school hours. Maybe I was having an inset day!

There are more but I got fed up of explaining my decision! I have taken her out and it is exhausting and expensive, but thoroughly worth it. Sure it hasn’t cured her, she still has PDA (even though we still only have it written provisionally).

Then there are those that agree!

I have taken Dinky out a lot over the last few weeks to parks and to places she really likes and taken lots of photos, which, end up on Facebook. People who have met Dinky during term time who we’ve bumped into have commented on how much calmer and happier she is. People have commented on the photos- how relaxed and happy she is. This really helps me to see I am making the right choice for Dinky.
She is calmer, happier, and much more relaxed.
That is if her mum doesn’t do very stupid things, like prepare Dinky for a day trip to Legoland knowing just how much going there would mean, getting the train, talking about which rides she can go on… Only to be standing outside Windsor castle waiting for the shuttle bus when a Taxi says “Legoland is shut today”!
Well, that would not result in calm, happy, and relaxed dinky. Nope. On Wednesday it led to meltdown! Tourists and residents of Windsor alike saw Dinky not so happy! The only redeeming factor was that Chessington was open and they have the bubble works and the vampire ride so nearly 2 hours later we arrived at Chessington! Oh well! We spent the 4 hours before it shut on 3 different rides. She managed 8 goes on the bubble works, 6 goes on the scorpion express and 5 goes on the vampire ride. She has a new phrase she has picked up, when I ask her if she liked/s something she says “are you kidding me? It was epic”, which she uses for EVERYTHING that she likes wether she just liked it or absolutely loved it! I think it is adorable!

Today I had another one of those “is she really autistic?” Moments.
That was until I had a few “you may be a parent of an autistic child when…” Moments this afternoon!

(Having to say “the bus is due in 2 minutes, so that is 2 minutes left to spin before it comes”
The meltdown when I said “we are going to a different supermarket”
Watching her spend over an hour playing with her completed collection of lego movie cups by lining them up in many different ways.)

I’m so tired I have forgotten the point to the post!
Dinky is refusing to take her melatonin- another downside of demand avoidance!- so is up until 11pm-1am, is up in the night some nights and up any time between 4 and 7 am. Possibly anxiety related as, as much as she wants to go out to places she loves, there are expectations, demands, waiting, travelling ect. Her sleep is no way near as bad as it was when she was at school though!

Dinky is off to play at what might be her new school with the special needs group tomorrow! I can’t wait to hear what she thinks of it! 🙂

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6 thoughts on “Am I doing the right thing? Yes. No. Maybe.”

Yes? No? Maybe?
Parents of all children make thousands of those decisions. The difference with
children with SN is that any mistakes
aren’t so easily absorbed. In lieu of a crystal ball or instruction manual, we have to make thoughtful, intelligent guesses…sue us!! :p

You are right. The other side of it is that what may or may not be right for a child with SN is also different to what may be considered right for a child without SN, the problem is parents of children with SN don’t bleat on about how parents of children without SN should be brought up or what is right or wrong for them. Obviously the parents of children without SN feel more superior as parents, like it was parenting that causes SN.

At the moment you are doing the right thing for Dinky. She is always learning when you’re out and about. At school right now she will only be learning how it feels to be looked at as naughty. Dillon had his self esteem knocked so low when he was having trouble at school. Now he is out and he is a different boy. Happy, receptive and able to cope with demands. Once our kids are in the right educational provision they will flourish and catch up academically. So , hey, carry on with your curriculum until the LA sort out theirs!!!

Yes you are definitely doing the right thing. A complete rest period from the terrible experiences of education that she has experienced thus far will hopefully pay off tenfold in the future. A period of unschooling will hopefully ensure that her next placement has the best possible chance of succeeding. Oh and don’t forget to mention to those who question how you educate or if you should be taking Dinky out that there is no law stating how a parent should home educate. Autonomous learning is perfectly legal and is exactly what you are doing right now with dinky. It is child led and the child learns naturally, parents assist and facilitate but do not lead or direct. This works great for Moll and it is amazing just how much is learnt from everyday experiences. School just isn’t an option for some kids with PDA but it is certainly worth trying all options first and I really hope that Dinky copes and thrives in the correct educational environment with the correct support xxxx

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Thoughts on the crossroads of law, politics and society - for when 140 characters just won't do. This blog contains general information and commentary on legal matters. It is not intended to provide legal advice. This blog discusses the law in England, unless otherwise stated.

Hello, my name is Julia and I’m an adult living with a diagnosis of Pathological Demand Avoidance (PDA). I also have a diagnosis of ADHD and Psychotic Episodes. PDA is a lifelong Pervasive Developmental Disorder and was first described by the late Prof. Elizabeth Newson in 1980. PDA is an Autistic Spectrum Disorder (ASD). Despite PDA being older than me (just) there are still massive gaps in its recognition, peoples’ understanding and its diagnosis by professionals. I’m one of the lucky ones and this is my story…….